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Suicidal thoughts out of the blue, could this be a flare up?

Hi everyone,

For the past two days I’ve been having strong suicidal thoughts and wonder if this could be indicative of a flare up. I get these images in my head of just doing something impulsive, and although I am by no means planning anything, I find them rather upsetting. I’ve been treated for insomnia, fibromyalgia and depression for about 10 years now, supposedly related to my lupus, (I’m currently 28 years old), but just went off quetiapine and sertraline last month (with my doctor’s guidance). My Raynaud’s is very active and arthritic pain quite strong lately. Has anyone had any suicidal thoughts on a flare up?

Thanks and hope you’re all well. Xx

M*

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I AM NOT A DOCTOR,

I think you should at least mention what you are feeling to your gp.

But sometimes nutritional deficiencies can contribute to conditions. Here is a link that you may find useful.

Watch "Natural Treatment for Depression Explained - Naicin B3 - Food Matters" on YouTube

It may not be the answer or complete answer for you though. So mention what's happening to one of your medical team.

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Hi, thank you for your kind reply. I will surely mention this to my GP and will take a look at this video. I didn’t really think about the nutritional factors, you might be absolutely right. Thank you! Xx

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I am sorry you are feeling this way. You have done the most important thing which is to reach out.

I think that you must be very self-aware to consider that this is a lupus flare as when you are in that dark zone it is difficult to see or think outside of the box.

Firstly, yes. I have had deep depression for no reason with a flare and that has included suicidal thoughts. My pattern is that I wake up with what feels like the worlds blackest cloud hanging over me for no reason at all. It took me a while to learn that this was lupus playing tricks on my brain. Several hours later fatigue would hit then about 10 hours later excruciating joint pain. Thats my pattern anyway and as I say it had taken a long time to train my body and mind to tell myself its Lupus that is the cause.

However, you mentioned that you have previously had depression and have been treated with SSRIs and that you have recently come off them or reduced them. Could this be a cause of the depression or suicidal thoughts? Also, are you on steroids or have you recently been on them or tapering off them as steroids gave me astonishing side effects of such an intense need to want to hurt myself which is one reason why I have to taper really slowly.

Another thing that brings about these symptoms of "cerebral lupus" in me is infection. If I start getting depressed or having confused or irrational thoughts I must check for infection.

Either way I think that it is vital that you get in contact with your GP asap. If you are having suicidal thoughts and feeling impulsive it can be not only distressing but exhausting too. Even if you have nothing planned, you need help to get yourself back on track. Pronto. Its so brilliant that you've reached out.

My advice would be to get to your GP asap. Yes, it could be a lupus flare but could also been down to other things as I've suggested. Have you been able to share any of these thoughts with a partner, friend or family member? It might help to make you feel a little safer?

I never thought that I would be someone to phone the Samaritans but I did and have done once or twice when I have been in crisis, mainly due to pain. They were a fantastic voice at the end of the line and were really helpful at the time. It turns out that the depression I was suffering at the time was all down to a flare caused by infection but it took a good month for that to come to a head. My primary symptom was a breakdown and depression. So lupus can do all sorts to the brain.

Please get in touch with your GP and if it helps, keep posting on here as you will get the most fantastic support.

You are not alone and I'm sure many people on here have been in that dark place.

I have and I'm not ashamed to say it. We need to talk more about mental health as there is still too much of a taboo around it.

I applaud your courage in posting.

Thinking of you and please keep us updated. X

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If I could like this post 100 times, I would x

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Mike, HOW many times have you been there for me when my brain has put me in a dark place! I've been a little quiet posting recently but that's because I've been on abx AGAIN! I'm learning everyday but what is weird is that the antibiotics cause serious lupus flares in me. Initially I thought it was the infection but I am 100% sure it is the antibiotics. How weird is that? Hope you are doing ok x

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Thanks, HT. It works both ways, of course. What an "interesting" way of responding to abx you've got there. I sometimes wonder if this group is mainly made up of true mutants. If we could only find a way of using our powers for good....xx

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Happy tulip,

Thank you so so much for you reply. I am overwhelmed by all the lovely things you've said here, and I am sorry to hear you've been down this path as well before. To be honest, I don't feel like I can really talk to anyone (family, friends... no partner at the moment), about this, because unfortunately it's a hard thing to understand when you've never really been in the same shoes. I guess that's why I found it easier to reach out through this platform, and I am so glad I did. Your words have really made a difference, and whilst I can't say I feel 100% well now, (I know it takes time and effort from my part to feel better), your words give me courage to try. Thank you, from the bottom of my heart!

I have spoken to my GP, and she's given me sertraline again, just like you said, this might be some sort of withdrawal symptom and I'd rather take the meds again than think or feel this way. As for the possibility of an infection, I got some blood work done as well and I am just waiting for the results. I didn't know this could be related! I've had this diagnosis for so many years now, and I can honestly say that lupus is such a treacherous illness. When I'm just starting to feel OK, it creeps back on me, out of the blue sometimes (or so it seems). It scares me so to feel so unstable and scared sometimes, especially when the most natural thing is to survive and my impulses tell me to go the opposite way.

Thank you again for your lovely words, and I truly hope I can return the favor and provide some encouragement if you might ever need it.

Xxx

M*

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You are most welcome. I have 100% been where you are now and if it wasn't for this very community supporting me and pulling me through the dark times I don't know where I'd be.

I'm glad to hear that your GP was able to see you quickly and you are back on meds. I know you'd probably rather not be on them but if they help you that is all that matters right now. Bloods being done is important. If they are normal then reassurance is a great thing.

Its a shame that you feel that you can't share how you feel with a close friend or family. Is there anyone in your family that you can write it down to? Sometimes just writing it down and not necessarily sharing it helps.

This forum is a brilliant platform to share feelings and emotions on. Don't feel that you can't keep posting again and again because I know everyone on here will do anything to help, support and encourage you.

I hit dark times when I lost my health, independence, career due to Lupus all within 18mnths. Then to top it off once I was diagnosed my fiancé walked out on me never to be seen or heard from again. I was in crippling pain and had no idea what my future held. Loneliness and pain basically. And then I stumbled upon this forum and whilst things aren't brilliant now physically. I am in a better place emotionally although that can soon change with a flare or if I have to take antibiotics, they really affect me.

You probably already have looked it up but it might be useful to read about cerebral lupus. I'm not suggesting you have it but Lupus can affect the brain in very unusual ways. In fact medics are beginning to look at depression from a totally different viewpoint and are considering if inflammation is sometimes the cause. Some studies suggest that antiinflammatories can treat depression.

It helped me to learn about this because if I start to feel really low or wake up with a huge black cloud over my head I force my logical brain to say, "stop, think. What am I depressed about? Has anything really happened to trigger a depressive episode or is this Lupus causing this?"

That way I have kind of "checked" myself. If I am depressed because I've had to cancel a day out for the 12th time because I'm in agony and my joints are rubbish then yes, I'm feeling low and can try and focus on doing something to try and make myself feel better, even if its something to distract myself. On the other hand, if I wake up with a deep sense of dread and feeling really, really low it is generally a flare. Acknowledging this and recognising this is half the battle for me because I know that it will pass and its just crappy lupus making me feel rubbish.

I noticed that you said you don't have a partner at the moment, I'm the same. Frankly I am fed up with having to justify why I was made medically retired aged 35 after a successful career in medicine. I'm focusing on me and my health at the moment and anyone who takes any positive energy from me can jog on! However, I am a tactile person so do miss hugs. There is a lot of science behind a hug. When we get a hug or affection from someone our brain releases oxytocin which is a chemical which makes us feel better and can relieve pain.

You can get the same benefit from stroking a pet (and they don't answer back or have any opinions or judgements if you want to wear big granny basher knickers)!

I would love a dog but am not well enough to walk one regularly.

Another thought is vitamin D 3, or the sunshine vitamin. Low vitamin D can affect sleep and mood as well as other things. I am totally intolerant to the sun so take supplements. Many people with lupus are deficient in vitamin D anyway so if you haven't already it might be worth getting your levels checked. I take 25ug a day.

Last but not least, I'll say this again. If you find yourself in that deep, dark place where you never thought you'd be, especially at night then do think about calling the Samaritans. They just talk to you and it is surprising how much talking to a stranger can help, especially at night. The hardest bit is picking up the phone.

Always come on here to vent, rant, rave, share good stuff and the not so good stuff. Its a brilliant site.

I know I'll need support in the future because its the nature of the illness, peaks and troughs. I've just finished 12 weeks of antibiotics and am having to start from scratch at tapering pred and getting my mobility up to scratch again so I know what you mean when you say that you think you have things under control and them, bam, it hits you all over again.

Keep going, stay positive and keep posting. You've been so proactive about getting help, nice one!! Let's hope you feel better soon x

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I have just been reading something about favourite hobbies of centenurians. People who live to 100. Apparently gardening is right up there. But it may be it is just about being out in nature. Are you getting out much where you can enjoy grass and trees?

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This is interesting! I've read about a japanese term, that basically translates into "forest bathing," and it's exactly that principle you're referring to; how being in constant exposure to nature can be incredibly beneficial for our mental health. I try to hike as much as possible, go out running and sit for a while at parks. As for gardening, I haven't really tried it lately, because I am quite forgetful and have ended up killing my plants by being negligent in the past. I should give it a try again, try to be more constant and definitely more nurturing.

Thanks for the tip,

xx

M*

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Hydroxychloroquine can have the very rare side effect of suddenly-plummeting low mood in predisposed folks, so when you see your GP, a medication review is in order to check for adverse effects from drugs or changes as a result of stopped meds. Wishing you all the best, let us know how you get on and keep posting xxx

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I woke up the other night feeling like that just a sudden plummet in mood, it was the night I took hydroxy, that could be what caused it.

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Hi eekt, thank you for your reply. I didn't know this. I've read that certain antidepressants, such as Fluoxetine, Prozac, can induce suicidal tendencies as a side effect, but Hydroxychloroquine? I've taken it for many years now and never really had any of these thoughts before. Could it be the overall accumulation that's causing it? I will speak to my GP about it and let you and suzannah16 know what she thinks about this!

Thank you for your words!

xx,

M*

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Hi. I struggle with this too and it is quite troubling to live with. There are lots of possible causes, of course. In my case, after years of this, it became clear I suffer from OCD and that my suicidal thoughts were part of it.

Contrary to popular perceptions, OCD isn’t all about hand washing and liking things neat - intrusive and compulsive thoughts are one of the most common manifestations.

Anxiety can be the root cause, which is of course common with depressive illness.

I think you should have an honest chat with your doctor about it. It may be related to lupus or medication or any number of things. But I think it is important to find out because there are ways you can deal with it. x

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Hi kenzie,

You're absolutely right about OCD not being compulsion only. Those thoughts can be so detrimental. I have spoken to my doctor and am back on sertraline. I am not thrilled by this, because I am so very tired of taking any sort of medication for such a long period of time (talking about obsessive thoughts, I often times feel as if I am intoxicated by everything I take and makes me feel as if my organs will just suddenly shut down, again just intrusive thoughts...). But to be honest, I'd rather take the pill than feel or think this way.

We need to teach and understand our mental health, because it's so easy to be misunderstood when the symptoms are not as obvious (as say, having a broken leg or bleeding nose). I hope you're feeling better these days, and the fact that you recognize that your OCD is playing tricks on you, is very insightful.

Thank you for your words,

xx

M*

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If you are having suicidal thoughts you should tell your doctor asap - even if you stopped taking the medication under your doctor's supervision it still may be an effect.

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Hi PMRpro,

I have spoken to my doctor and yes, she said this could be some sort of withdrawal symptom. I am back on sertraline, hopefully that will stabilize me soon.

Thank you,

M*

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Thank YOU for listening and asking your doctor - now I can get you off my mind xxxxx

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Hello MerB90 ,

I am no expert but I was wondering if this sudden emergence of negative thoughts could be liked withdrawal symptoms caused by coming off sertraline recently? There is often a tricky transition period when coming off ssri's. Perhaps you should discuss it with your doctor. They would probably take a conservative approach.

best wishes xx

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Yes! My doctor says this could be very possible. I am starting on sertraline again, slowly this time as my doctor wants to keep me on a lower dose this time (I've been negotiating the possibility of going off some meds for some time now as I do not like taking so many things)... Thank you for your reply.

xx,

M*

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Heck, MerB90, just read your post again and spzgirl51's reply again, both quetiapine and sertraline can cause "discontinuation syndrome" when treatment is stopped.

"This most commonly occurs when treatment is stopped abruptly and can manifest with symptoms that seem very much like the depression and anxiety SSRIs were being taken to treat."

verywellmind.com/ssri-disco...

Be well xxx

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This makes a lot of sense. Prolonged intake of any substance can definitely cause withdrawal, even if I did taper off slowly. I am back on sertraline, hopefully won't need to take such a high dose anymore, but anything to stop feeling this way.

Thank you, xx

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So sorry to read this. Please do get the support of your GP ASAP. I am sure your health causes you low mood at the best of times and perhaps the change in meds is the tipping point. Please get the help you need. In the meantime everyone here cares and understandsee so keep in touch. Sending love xx

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Hi Flueby,

Thank you for your lovely words. I have spoken to my GP and seem to be getting on the right track again.

Xx,

M*

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I would research if stopping the two medications would do that. Maybe you need to get back on. I don't think a sudden mood drop is a sign of flare up. Buy something changed . It could be medication, hormone fluctuation, etc. To me i only feel like that when i lower steroid dose or when hormones suddenly drop. I usually just wait patiently , do walking as much as i can and i know it will pass and not much else you could do. Also maybe there was some environmental trigger? Maybe time to see a counselor if that's the case.. good luck hope u get better asap. We know how it is ..

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Hi,

Yes, this seems like the main reason I am feeling this low lately. I had to get back on the sertraline, but you know how these types of meds take time to reach a therapeutic level, so I am just hoping this was the reason I suddenly felt so decompensated. Thank you! xx

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I have taken, in the past, both of the medications you mention. They have a long period of withdrawal symptoms ( cutely called discontinuation symptoms by manufacturers who don’t want you to think they’ve got you hooked) Sorry, that’s a rant. For me, they are the devil’s brew.

I’m not sure if it’s a psychiatrist or GP who prescribed them. My psychiatrist would never recommend coming off one med, never mind two, just like that, unless they were to be replaced by something else.

You do need medical advice quickly and I have much admiration for you speaking up so openly.

This might have nothing to do with the psych meds. Lupus on its own can cause depression. I’m not speaking in any medical capacity of course, I have no training whatsoever.

I can’t recommend the Samaritans highly enough. You don’t have to be suicidal to call them, just in need to talk. I’ve been soothed by several calls just when I’ve been in tremendous pain at 3 am.

I do hope you find a reason and get help quickly x

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I am replying to this as a person who was unmedicated for a very long time. I guess to others it looked like depression but to me at each episode of this raging rash appearing along with others symptoms I would find myself in the most darkest of places. Driving along just wanted to end it all on one side of my brain with the other telling me I can get through it. It’s so difficult because those thoughts are real and you just can’t see no end In sight and you completely forget the real you and how well you can feel.

You have to talk these thoughts through, with anyone even if they are giving you advice which doesn’t help, for example “your be ok in a few days”. The days are so long and drawn out when you feel this way that you just don’t want to do one more day. I have received some really good advice from this site. But from my own experience my coping mechanisms are:

1. Don’t even think about tiredness or pain. Get up trainers on, ear plugs in and walk. I’d often cry as I walk but it was a nice release of emotions

2. If the thought process is really bad and you can’t win the battle, sleep as much as possible to get you through.

I’ve learnt these coping strategies after long suffering . As this maybe so new to you , please don’t sit back and not take action. You must talk it through, speaking out loud can help you Chanel into yourself in a more manageable way.

I hope this does ease for you. Wishing you better xx

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Hi,

Note that long term use of corticosteroids particularly at high doses eg prednisolone etc can induce psychiatric reactions. See BNF 70, 2015/16, page580.

A full list of side effects is given: depression, irritability, insomnia, suicidal thoughts, paranoid states etc.

Advice:

*seek medical advice, GP? Better with hospital consultant specialist

*reduce/discuss with prescriber >>a lower daily dose?

I use to be on 45mg/day (9x 5mg tablets/day), phew! serious lupus nephritis😭 some three years ago with a complex & strict reducing regime with consultant nephrologist. Kidney function ok for now?!

Now on 5mg/day but this will be reviewed soon.

Hope this helps?

Regards,

Phillippo

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I wouldn't say I get suicidal thoughts - more a feeling of impending doom when having a flare. I explained this to a doctor many years ago and she said conventionally I would be diagnosed as depressed, but she was a homeopathic doctor and she understood that it was not depression, but a physical symptom of my health problem.

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